Quote from: bgreeneee on September 30, 2019, 05:25:12 PMDays 11-12: I continue to feel stronger. Now that I can move my leg easier when sleeping, I’m actually able to sleep. I only took Ambien the one night, had a nice creepy dream to go with it. I’m still waking up a couple of times at least and moving from bed to chair and back, but last night was by far the most consistent sleep to date with no drug assistance.
The back of my thigh still has a huge dark purple bruise about the size of my outstretched hand from the bone break i assume with no real signs of fading...think it’s going to take weeks for that to go away. It’s the ugliest bruise I’ve ever had...including when I broke my femur myself lol. Also still bruising near the incisions but not too bad and looking better. Incisions are looking good and feel so much better after removing the steri strips.
I’m going to hit 6mm today and I’m super anxious to get the xrays to confirm the progress. My target is somewhere around 25, which is around Oct 19. I’ll see the doctor in 2 days. With KP, you can email the doctor directly so I’ve traded a few emails but haven’t seen him since the day after surgery.
As far as pain goes. I’d say it’s minimal. Certain leg movements hurt more than others with the one that bothers me the most being the movement to pull my leg in towards my body...the muscles that contract over where my big bruise is...not sure if it’s the bruise/break or the stretched muscles or just continued posit surgery trauma. I have lapsed many hours with no meds in the past few days but for the most part still consistently taking (only) Tylenol.
My doctor has pretty much advised to do minimal weight bearing but I do weight bear here and there with no pain, mostly when I’m stuck with one crutch or need to carry something across the kitchen or something like that. I’m going to talk to him about the exercise bike as I think that might be good soon(?).
Three non lengthening things that get some focus during this time:
* My cat: She is loving this. I’m a human pillow. Thankful for the feline friend that follows me from place to place. She’s robbed me of some sleep but the snuggles are worth it lol.
* My birds: Well they are God’s I suppose, but I insist on my caregivers (teenage son and wife) keeping the feeders out my window full and the window open as much as possible to hear them. Songbirds, hummingbirds, jays, crows, even a big hawk who comes looking for a snack.
* My Reading: I’ve also started reading...which I wasn’t up to until the past few days since I had no sleep. I’m normally not a big reader but if there is ever a time, it’s now. When I don’t feel like reading off a page, I have the iPad read to me aloud.
Little things like this help. We are not just physical beings...while in relative isolation, if you’re only focused on the physical and not the mind and the spirit, your physical healing will suffer. All for now..I appreciate reading the other diaries that are current right now, keep the updates coming and my prayers for you.
Definitely do stretches with Strap and do bike as tolerated.
If stryde is not full weight bearable so what is the difference then between it and Precice nail 2 ?
Diary: 1" LLD Femur - Stryde - September 2019
Hi Hamza—Styrde is fully weight bearable per design. My doctor as well as the distributor told me to play it safe and not push it... this is mostly just because it’s not as critical for a LLD patient since we still have a “good” leg. I have an appointment with the doctor today and will ask when he thinks he will release me for more weight bearing...but during the growth phase I’m not doing too much weight bearing. I assume it will depend on my bone consolidation in xrays. As I mentioned before, I do weight bear here and there as needed just moving around the house.
Also, just as an FYI for your situation, I asked the device distributor that I see for Stryde about nail failures in the previous versions prior to Stryde and he had only seen 1. He said the patient he knew of that had the failure ignored the weight bearing restrictions and was walking on the nail. He said the guy had an insanely high pain tolerance and did way more than he should have way too early. That gentleman had the nail removed/replaced and started again.
I'm not posting, but I'm reading your daily update. Very good and thanks to share you experience with us.
For anyone interested, I setup a YouTube channel as well with vlogs of daily progress. I don’t record every day...and these aren’t fancy...but it provides some video progress in tandem with the diary here.
youtube.com/channel/UC3M6CaDHmoGXDoVOtWymJig/videos
I had some issues making the channel a link here...so you’ll have to copy and paste to a browser.
Quote from: bgreeneee on October 02, 2019, 02:26:31 AMFor anyone interested, I setup a YouTube channel as well with vlogs of daily progress. I don’t record every day...and these aren’t fancy...but it provides some video progress in tandem with the diary here.
youtube.com/channel/UC3M6CaDHmoGXDoVOtWymJig/videos
I had some issues making the channel a link here...so you’ll have to copy and paste to a browser.
cool man!
cool videos!
Not sure if someone asked this, but who is your surgon? Were you the first Stryde patient of this doctor?
Ok I see you will only reveal it via PM. Could you send me a message plz? Thanks
Yes, I am the first Stryde patient of my surgeon. He has used the previous version of the precice nail as well as I think ilizarov. He is a trauma surgeon, limb lengthening is not something he does frequently at this point though he had significant experience in his residency in Southern California.
I imagine that a trauma surgeon has a lot of tools in his belt that are applicable to this as they are charged with putting people back together after some severe accidents. A lot of the complications/risks with limb lengthening are similar to what is dealt with in trauma. I personally met 2 people earlier this year in the SF Bay Area that had been Precice patients, both were LLD patients. I was fortunate to be at an event where I heard about Precice, and I sat in between them (a miracle). 1 had a similar story as mine...1 was a complicated trauma story where a large steel beam fell on him at a construction site. Neither of them used my surgeon. One used a surgeon out of UCSF and I think one used a surgeon out of Davis (I think?).
I did see one surgeon prior to picking my current surgeon. He had never done Precice but was a trauma surgeon and was confident in being able to do the surgery. In the end, I looked more within my network and found my current surgeon. I contacted NuVasive and they were able to help with locating a surgeon with experience with their product.
Amazing story.
One part I would have to respectfully correct is that limb lengthening is still a specialty and not all trauma surgeons would know all aspects of limb lengthening. Since your surgeon has done a residency I think he should know LL stuff though.
Could you write down all the risks etc you discussed with your surgeon about this surgery? It's good hear this from a doctor outside the CLL world. I am particularly keen on knowing the chances of amputation.
Hi Limewalk-
Good point and I don’t necessarily disagree with you. as far as the surgery goes, a NuVasive rep that I discussed the process with prior to surgery said to me that the surgery itself could be done by pretty much any competent orthopedic surgeon.
The first surgeon I consulted with was a very competent and extremely confident surgeon. I did not pick to consult with him but was referred to him by my primary physician when I asked to investigate this process. He said he would and could do it...but his recommendation was strongly to shorten my longer leg. For an LLD patient with a trauma history, touching our good leg is not something we want to do..leave my good leg alone! I also hate shoe lifts, my balance is not good and I actually would spend as much time as possible just wearing 1 flip flop that was about 1” thick. He too claimed to have some experience in his residency with limb lengthening but not clear to me when and how much. He was very skeptical TBH and especially hit on risks like nerve damage and dropped foot due to the growth...nerves don’t like to be stretched he said. He also spoke of some sort condition with the rod that some people have where they are bothered by it, something like they always feel pain/discomfort where it was inserted. When I pressed him a little on how these risks differed from shortening the good leg...most of them were the same. I think he down deep he thought the risks of either weren’t worth the reward. Basically, “you’ve lived with it for this long, just wear a shoe lift” was his opinion. I appreciated his opinion because I feel like I got a good negative opinion for me to consider. But truthfully, I didn’t like his attitude and his “I can do anything” mentality did not have the voice of experience I was looking for.
So I looked for an experienced 2nd opinion and selected my current surgeon based on the fact he was experienced (got name from NuVasive). He’s about an hour away from me but who cares! Night and day difference of opinion and he had the experience I was looking for. Any surgery has risks...trust me, I’m living proof. But he saw the risks as low risk for me and thought I was a good candidate. I raised all the concerns I had heard and he really downplayed them all. I liked his attitude and some side research came back positive with him being a well respected surgeon.
So it was up to me. My faith was a huge part of my decision...I don’t believe in coincidences and there were just so many things that miraculously lined up. Sitting between the 2 recent precice patients at an unplanned dinner was absolutely amazing and there were more things like that. After much prayer, my wife and I were at peace and here I am. But I will add, we are at peace with the risks too, meaning I’m ready to accept failure. I trust in God’s will and am ready for either good or bad outcomes.
In my reading/research, including this forum, the risks escalate with greater growth. My discrepancy is on the lower risk side from what I’ve read. 5cm seems to be a tipping point for escalation of risks and pain from what I’ve read, but there are others on the forum more researched and experienced than I on that. I haven’t heard a lot of amputations but I suppose that is an extreme risk/possibility.
That’s my perspective, hope it’s helpful.
brgreene, what's your weight, how tall are you and what nail diameter they used on you?
By the way, good videos on youtube. You have the old ERC. I prefer other model of crutches.
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